“How long do you intend to keep caring for Mary Ann at home?” he asked. “Until I can’t handle it any more.” I answered. Then the hardest of all, “How will you know when that time has come?”

Since we live in a world of denial that provides us the emotional and psychic room to live each day without constant dread, those questions are not often asked and answered. First of all, I don’t know the answer. I have intentions about how I intend for this story to end, but I have no answers to questions about how the future will actually play out.

Two days ago I was asked those questions with which I began this post. Today I experienced to some degree elements of the answer I gave. As I have said in earlier posts, my intention is for the two of us to stay together here at the house at least until one of us dies. My intention is to use as many resources as I can locate and afford to help make that possible. That intention is not just an intellectual decision about how I intend to proceed. That intention lives in insides.

With that said, I had to answer the question rationally. I intend for Mary Ann and me to be together here at the house until I can’t handle it any more. The question that has to be addressed, the hard question is, how will I know when I can’t handle it any more. I stumbled around some as I tried to answer that hard question. The two things that came to mind are hallucinations that get out of hand and grow into a steady stream, and the inability to get any sleep. The two are related.

Today was an example of those two problems converging. Last night Mary Ann was up multiple times, as many as a half dozen in an hour. Almost every one of those times, there were people, or raccoons or other visual images not actually present outside of her mind. The lack of sleep during the night meant that the hallucinations came in a constant stream this morning when she got up. She asked if we were the only ones in the house, implying that she thought we were not the only ones.

By the way, yesterday, as she was eating the last piece of strawberry-rhubarb pie with ice cream (pie she had eaten with great enthusiasm for the two days before), she decided that the filling in this last piece of pie had somehow changed into tomato sauce. She ate the ice cream, but left most of the huge piece of pie. I am afraid of the day when I can’t get her to eat enough food because of what her mind is seeing.

Today, she grabbed the bedspread as I was folding it at the foot of the bed preparing for her nap. She said there was a sheet of stamps or stickers stuck to it. The bedspread was right in front of our eyes, she had her hand on it, convinced that she was pulling off what was stuck on it. She told me to turn on the bright lights on the ceiling fan over the bed so that I could see the sheet of stamps. When the light went on, she reluctantly admitted that they were not there. On the way to the bedroom tonight, she stopped and told me to get rid of “that” and then stepped over something that was not there on the floor in front of her.

This morning, when the hallucinations were at their steadiest, Mary Ann simply could not sit down for more than a minute or some fraction thereof. She would jump up to go to one spot or another to get a good look at or pick up whatever it was she saw. I had to jump up every minute or fraction thereof to grab hold of her gait belt so that she did not fall. Once she was so dyskinetic when she jumped up that it was all I could do to untangle her feet and help her sit back down before she fell into a couple of tables next to her. The activity was so steady that I could do nothing but follow her from one hallucination to another, or one task she had in her mind to do, pretty much always losing track of whatever it was by the time we got wherever she was leading me.

If hallucinations came at that pace constantly, I would soon be completely unable to cope. The lack of sleep impacts both of us. The less she sleeps at night, the more she hallucinates, the stronger and more vivid and more frequent they become. The less she sleeps, the less I sleep. The less I sleep, the less able I am to cope with the hallucinations. They compound one another, lack of sleep and hallucinations, and my capacity to cope.

Here is how my inability to cope expressed itself this morning. I told Mary Ann that I had been asked about how long I could keep her at home. I told her that my answer included two things that could make it impossible, lack of sleep and streaming hallucinations like the ones that we were dealing with this morning. It was cruel to say that to her. I have no excuse. My frustrating inability to cope with the constant following her to one thing and then another, after having a very poor excuse for a night’s sleep was the context, but I chose to say those harsh words. She has Parkinson’s Disease Dementia! She didn’t choose the disease! She didn’t choose the hallucinations! She didn’t choose the frustrating behavior!

I guess there was a part of me that hoped the words would get through to the healthy part of her mind that has some ability to control her actions. What she said next, broke my heart. “Then what would happen to me?” Usually, whatever I say just bounces off with no reaction. This time it broke through.

I need say just how hard it was to actually write for all to see those last paragraphs revealing what I said to her. I am ashamed and embarrassed. I can only hope that someone reading this post has been there and said things of which you are not proud also. I have chosen to face my own flaws head on without pretense, since it is just too hard to pretend to be someone I am not. My hope is that facing the flaws head on, will allow me to grow into someone better able to cope, a better Caregiver.

In answer to Mary Ann’s question about what would happen to her, I immediately told her of my intention for us to stay here together until one of us dies. I told her I would use paid help here at the house to help do the care when I could not handle it by myself. I told her that if I die first the kids would take care of her, keeping her close to them.

All I wanted to do was to get her to stop hopping up, responding to the various things she saw. She did stop hopping up, and I was able to get my shower done, make the beds, write an email or two and finish getting her ready for the Public Health Nurse’s visit. I don’t know if what I said had any impact in that change in behavior, but even if it did, I feel no less guilty about being so harsh.

It is at times like this that I am very grateful to have a God who has openly addressed our flaws and stolen from them the power to ward off the Lord’s love of us. That is why the song is called “Amazing Grace.” The power of that gracious love is transformational. It frees us to face our failures. At the same time it challenges us to grow and change, cradled in the arms of that love.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,” click on the name of a post and you will find a box at the end of that article in which you can write a comment. Clicking on the title of the post you are reading will accomplish the same thing. Comments are appreciated.

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4 Responses to “The Hard Questions”

Don’t beat yourself up for too long Peter.
Caregivers have end of ropes we cling to.

I myself am guilty of an excessively harsh answer with my husband whom also has Lewy Body. Our biggest issue right now is driving or his inability to. His cognitive bounce back was HUGE and he knows he is thinking clearer. I know this too but for how long, a min, hr, day?

My reaction came from a tired and fearful body and mind. I lashed out at him when he chose to go on and on about driving and me keeping him here locked up and he was going to move away and live alone etc etc etc. (I let him push my buttons) I tried to be logical and reason with him until it escalated and finally ignited into a screaming match from us both and me reduced to tears.

I proceeded to “tell” him that I would do whatever was needed to prevent him from driving and risking not only his life but the life of others. (He rolled his eyes at me)He said I would never find a lawyer to take away his license, I told him I didn’t need one, just a copy of his medical records and a judge.(I pray this is never a decision I need to make) Still trying to “break through to Lewy via my poor husband” I asked him how he thought he could drive when he couldn’t even take care of his own self by shaving with an electric shaver.

Then a moment of clarity hit me and I busted out laughing at myself. He wanted to know what I was laughing about and I said “Because I’m all upset and trying to have a logical discussion with you and you may not even remember it in the morning and I’ll be the only one upset still.”

Still in his huff he decided to show me he could take care of himself and went off to shave. He returned to me quite a while later smelling of shaving lotion and said he couldn’t finish. I calmly got up and said “lets go take care of it” and we did.

That was almost 2 weeks ago. I am not proud of the way I handled that and wish I had done it a different way. Today I still live with the sharp bitter words of my tongue. Today he has forgotten what I said.

I pray when engaged in such discussions that I shall have those “moments of clarity” much sooner.

“A gentle answer turns away wrath but a harsh word stirs up anger”

These days the stirring is in my own pot.

Please remember Peter, You are a child of God. He is your father. As your father He loves you, flaws and all.

You are human and under extreme pressure. As I read your blogs, I think back to the time when I was taking care of my aging parents. Oh, they knew what buttons to push to get me charged….and then I would leave there home and cry all of the way home, knowing that what they were doing probably wasn’t in their control.

I made a promise to my parents that if something happen to one of them, I would take care of the other one until the end. After one night of my dad being up all night (this was the night before he passed away), I told Dave that I didn’t think I could do this day in and day out. Dad passed away that morning, and I felt so guilty having said that.

God never gives us more than we can handle. Keep up your faith. It sounds easier said than done, but with God guiding you, he will help you take it step by step. That is why we have our faith in God…to guide us along the rough spots of our life.

I pray for you both every day. Having known both of you for over 50 years (that sounds like a very long time), I know both of you well……and you will make it through all of this.

And should the time come that you have to get additional help or the need to put Mary Ann in a facility so you can regain your strength, know that this is God’s way of helping both of you to cope.

Pr. Pete,
So many of the things you share in your blog are parallels to my experiences with my husband’s dementia and illness. Yes, he had a different type of dementia, but many of the same symptoms.

I often questioned would I know when I could no longer care for him. You will know! I know I denied/fought listening to my inner self and thoughts. At some point in this journey, the message became clear. This is the time to look to others to give the care I wanted to provide for him until his death. I was then able to make the decision without guilt.

Remeber “caregivers go down firs.” If that happens the family has both parents to care for.
I always knew I didn’t walk the road alone. My Lord was with us every step of the way. He is walking with you and MaryAnn too.

I have been reading Pete’s web site diary but never those of the ones of you good people leaving comments. I have no education except a degree from the school of hard knocks. I want to remind all of you wonderful people it is not God our loving Heavenly Father that keeps those times you think you fail in your memory. It is the enemy. I will not even use a capital letter with one of his titles. he is the one that pokes and pokes at us about our short comings. It is God our Father that we should look to and remember the good that you do for your love ones, the cooking, cleaning, the trips, the driving, and,yes, the shaving. I could go on and one. I have one daughter that swares she will never let either of us go to a nursing home and I recently made my dear son-in-law pinky sware that he would never, never move me into their home. It is my intention to soon put that into writing. So to each of you dear, wonerful caregivers do not give the enemy to much control over the bad times, arguments and the things that are so hard for you to do. Stomp your foot at the enemy and look UP! Your help is as close as the sigh of “FATHER, I NEED YOUR GRACE AND ENCOURAGEMENT.” Do not be cheated out of the heavenly hug you will feel.